Public & Private; The Littlest Patients

By ANNA QUINDLEN

Published: January 29, 1992

The first time I heard the story I thought it was merely bizarre. The second time I thought it was a coincidence. The third time I began to wonder what was going on.

And when a distinguished doctor described the treatment modalities of some of his colleagues as "child abuse," it seemed clear that there was a problem worth noting.

Although abortions performed during the last three months of pregnancy account for only one-tenth of 1 percent of all abortions, there's no escaping the horror that they take place at all. Over the last five years, three women have told me they ended their pregnancies in the third trimester. There were many reasons for the decision, but one was especially chilling: Each feared handing her baby, diagnosed in utero with severe birth defects, over to neonatologists.

Dr. Alan Fleischman, the director of the division of neonatology at Albert Einstein College of Medicine in the Bronx, was not surprised to hear it. "As I go around the country and talk to families," he said, "I'm just appalled at the amount of child abuse we're inflicting on neonates."

Enter any neonatal intensive care unit, its isolettes like clear jewel cases, and at first glance all the machines and monitors obscure the person they are there to serve, a baby as small and translucent as a sheet of bond paper. That is what some parents believe has happened; the technology, like a kind of modern dybbuk, has taken control. While concern over the boundaries of medical treatment has focused mainly on the elderly or those with terminal diseases, it seems we have forgotten the littlest patients. And it seems that many doctors have forgotten those patients' parents as well.

Federal "Baby Doe" regulations, which many doctors have seen as a mandate to treat all babies aggressively, no matter how small, how sick or how impaired, have contributed to the problem. So has the difficulty of prognosis; some very small babies can be saved with few ill effects, some die, and some wind up with impairments so profound that their parents say they wish they had not survived.

The result has been that women like those three who had late abortions have come to believe their children will be poked, prodded, tested, examined, ventilated, resuscitated past all reason before they inevitably die. The physician's dictum "First, do no harm" sometimes seems to have been whittled down in neonatal I.C.U.'s to "First, do." For some doctors, climbing the heights of extraordinary means is a little like Everest: they do it because it is there.

"A large number of neonatologists are very aggressive for two reasons," says Dr. Fleischman. "They see themselves as heroes pressing at the threshold of medical technology, and they are inappropriately paranoid that it is not legal to let families make these choices. The result is overtreatment of infants not in their best interests."

One of the recurring motifs in issues of life and death is that each is distinct and most are difficult. But even tough questions demand a search for answers. After years of debate, we finally have Federal law that requires hospitals to ask patients if they want to plan for the worst by filling out a living will or designating a health care proxy.

Now it is time to turn to the conundrums at the other end of the continuum. One study showed that a third of neonatologists were treating babies they believed had nothing to gain. Another showed that doctors were paying far less attention to what parents wanted for their children. "They told us to get a lawyer," said one woman who wanted her baby's respirator removed. The baby later died, but the parents' anger at doctors who, they believe, treated their daughter only to hone their own skills lives on, mingled with their grief.

Miracles are performed on premature infants every day; neonatal intensive care units are often the beginning of happy endings. And some are extraordinarily sensitive to the wishes of parents and the futility of prolonging certain lives. But when doctors themselves describe treatment as abusive for the tiniest of patients, when parents describe the aggressive treatment of their dying children as intensifying their pain, when some women imagine it would be less painful to abort a handicapped child than have its life prolonged in a hospital, something is horribly wrong.